Since Gavin has LCA, Troy and I both carry the defective gene. We carry the defective gene, but we are not affected by gene. Our children are, or rather that chance that our children will be affected, exists.
This means, it is hereditary, and each of our children that we have has a chance of being born with LCA.
A 25% chance.
I have heard many different opinions about those who have this information, and opting to or opting not to, have another child.
If you had a child that was born with a hereditary, genetic condition, and you had the facts that 25% of every pregnancy would result in that genetic condition being dominant, would you have another child?
Why or why not?
I know this answer will definitely vary, given the condition, but some have very hard stances one way or not. Explain your answer in the comments, I would love to get some more opinions on this. It's not talked aobut too often, and there is no right answer - just opinions.
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What a hard question? I would say yes, I would. I wouldn't if the genetic condition causes a life and death situation or overwhelming pain and discomfort to my child. dpoes that makes sense?
do you want me to include a lot more information and you can have my name included, I don't mind.
Hugs, Meghan
I would not. If our first child would have been affected, we would have had no more biological children. Now that we are in it, and see what it means, and how much attention it takes, I wouldn't want to do it twice over, or more. And because we have adopted a child, and that was a part of our original family plan, I would have been okay not having any more biological children. I think Finley is wonderful, and I cannot imagine life without her. But watch her go through LCA is aggrevating and heartbreaking as her mom. I wouldn't want to do that again.
ReplyDeleteI thought about this question for the past 24 hours. When we finally got Corey's results, that he had LCA, we were giving a 50% chance that this would happen again. And at that time we were told that there were only 12 known strands of LCA.
ReplyDeleteEven though I wanted 1 more child, I don't know if I could mentally do it again.For 6 years we didn't know if what we were doing for him was helping him or not. I change my answer: I would not be able to mentally do it. It's hard enough answering this question.
Hi Jenn,
ReplyDeleteWe just found out Audrey's genetic test results. Her gene has been identified, but with her particular genetic variation, chances are high she'll develop kidney failure at some point. We found out that her dad is the only carrier and and I have normal genes but for whatever reason they didn't meet up with his. His recessive gene duplicated and that's what Audrey inherited. This happens in about 1% of LCA cases. Because of this, we have a smaller chance of having another child with LCA in the future, but back when we assumed that our chances would be 1:4, our mind was already made up to have another child. News that there's a risk to her kidneys also has not changed our minds.
Everyone feels differently about this issue, especially parents who have been there and have dealt with the worry and heartbreak that comes along with having a child with any disability. The doctor appointments, therapies, school visits, and accomodations that our kids need are a lot of work. Also, the child may have additional challenges in life, which may make it more difficult for them.
To us at first, parenting a blind child felt like going into uncharted territory with absolutely zero supplies or skills. We had to simultaneously deal with our shock and sadness as parents, research and figure out what to do medically and educationally (we'd never known a blind person, let alone even heard about LCA) make appointments, deal with everyone else's feelings, keep our marriage together, and of course, love and care for our baby.
Compared to the first time, having another blind child doesn't seem like such a big deal. I don't think we'd feel as powerless as we did at first because now we're informed, we have created a support network for ourselves, and we've learned so much from Audrey. Through being her mom, I've met some truly remarkable people with all sorts of disabilities, and I have learned that the only limits my daughter has are her sight and the limits that are imposed on her by others.
ALL this being said, we'll probably wait until Audrey is in school before we try having another baby because she is a HANDFUL.
We know there is a kidney failure risk associated with Audrey's LCA. We would still have another child if we knew the same risks existed. We feel like there are so many risks in life, but we can't worry ourselves to death about them (we've done a lot of worrying). We have to just learn to accept risks as a part of life and deal with them when they actually present themselves as problems. If we don't have another child because of the risks, we might miss out on someone truly amazing.
I totally understand why parents would choose not to do it again. This is just our family's very long-winded one. ;)
We are facing this question our baby girl was diagnosed at 4 months she is now 6 months and we are awaiting confirmation by genetic testing
ReplyDeletePart of me feels it would be irresponsible to have another child, but part of me wonders if I would miss out on something wonderful.
We have no idea what's Instore for us yet , I am scared stiff and still in shock have good days and bad days
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